Page 15 - The Bubble Trips

 

          Overall this place of rehab gave me a sense of myself in this new world, the world that held me in a different way. I have a team looking after me, nurses, therapists, doctors all the same, all communicating for my benefit. Suddenly this horrific day that has happened made me something special? Rather, specialized. I’m not sure I preferred this new me over the old me, no of course I don’t, but here I am.

 

          Among all the different therapies I was receiving was recreational therapy. This meant I had to choose one source of interests I have in the outside world. All I could think of was the bookstore. The first outing they presented to me was to Walmart… I turned that down. No way was I going to face the world “like this” for the first time in a place like that. It just wasn’t my thing and it hadn’t been before the accident either. So I waited and finally a chance to go to the bookstore came up and lo and behold I was the only one going! Next thing you know I’m heading into a little minibus with my family, brother, sister and sister-in-law. A trip to the bookstore where I managed to buy some candy that was on sale and a lap tray that might come in handy for certain therapies. I looked at books but we had puzzled out yet how I would be able to read them. We just wrote down the names of some titles.

          So that first outing I felt almost cacooned with my family around me. It didn’t seem real, no, it was very real but I was enjoying myself looking at stuff, books, candy, accessories and so on. And the people were nice to me, as if they’d all seen it before and knew exactly what to say and what to do in my presence. In fact we did run into a woman who had been a nurse. So in this city that held this huge rehab facility it was expected that one would run into plenty of people who are familiar with people like me. It was a safe place to be and this was something we realize but I don’t think I fully comprehend how much that feeling of being so protected was going to matter later on.

          And other therapy I had was concerned with leisurely activity, I chose art. Reading seemed an unlikely immediate possibility even though the bookstore outing was fun. During art therapy I learned I could paint using a mouth stick. This was a unique contraption that one held firmly in their teeth and on the other end could be attached in any number of tools, including of course paintbrushes. I was not in love with this idea but I tried. It took a few times and it was tiring, unbelievably tiring with my weakened neck muscles. I managed to paint some strokes on a piece of paper and later a terra-cotta vase. I also painted some colorful strokes on a rock to be placed in their garden along with other painted pieces from other patients. I felt both proud and ridiculous all at the same time.

          The last type of therapy I received was actually “assistive technologies” where I learned about using Dragon voice recognition and also some phone gadgets that so far have not proved themselves worthy. I was happy to learn I could communicate to the world again but it didn’t change this idea that I was living in some sort of illusion bubble. I could go out in the city because the city catered to people like me. It was easy for me to remain wrapped inside myself and feeling like the world still couldn’t see me as “me”.

Page 14 - A Little Self-Awareness

 

          It was here that I first looked in a mirror… Wow, was I not the person that got in that car that day! I'd grown to thin and my hair, normally so blonde from sun exposure, and my own doing, ha ha, had grown in so dark. That alone was shocking because I had been a natural blonde since childhood, and only recently started coloring it for thickness. Now I had the dark head of hair with blonde tips, go figure. My skin was behaving well, forever my nemesis. I'd always had problems with acne, always had skin like a teenager. But ultimately that went south again too! My hair needed to be washed, and my face needed help and I was always cold… I wore a lot of hats. It killed two birds with one stone. A couple of the nurses and techs got together to try and wash my hair from the back of the bed… I couldn't yet take showers…

          I battled this odd curse of paralysis on many fronts. Forming a new image of self does not happen quickly or easily. Things are done in bits and pieces. I finally got a haircut by a good Samaritan that my neighbor across the hall knew of. I had surgical glue stuck in my head here from where my scalp was cut severely. The staples were gone, but that glue, that glue! This wonderful hairdresser had the patience to cut my hair and work out that glue with conditioning sprays and tireless fingers… The whole thing took about two hours. According to one family member, I now looked like a 12-year-old boy! My hair was short, the glue was gone and I felt a little better, though not myself. I was some sort of strange version of “me” that I had not met yet.

          There were other challenges aside from looking like myself, there was lack of sleep, constant nausea, new pain I’d never known before. Insomnia was always a battle and finding the right concoction for sleep seemed like a constant endeavor. Not to mention having visits throughout the night for various things like emptying my catheter bag. Every morning I was nauseous before taking my medications and often had to spin up gobs of mucus before I could take them. Other times of the day it would just hit me and I would be sick to my stomach albeit minimal amounts. It was finally decided that a certain drug I was taking was making me sick, and antidepressant I had never given permission to be put on! That was back at trauma center where they made that executive decision. The same people who were so impressed with my attitude… But I guess expectations are that everyone crashes eventually. The pain, that was physical and something I’d never thought I could endure.

          Severe pain is a concept I’ve had little intimate knowledge of throughout my life. So when rehab started and my body started responding, mostly my left bicep and shoulder, a monster was awakened! I learned about trigger points in deep muscle tissue and I learned why people get cortisone shots, though I did not. My OT managed to hit a spot in my back one day while we were working in the gym, that sent me through the roof and beyond. The tears started… A flash of pain so intense I could only see white light for a split second. My OT very calmly finished our session without responding to my yelping. The pain subsided as she knew it would and she explained to me what has happened and why. I respected her for that and it was in her training obviously not to crumble just because her patient did, ha ha. In that moment it never occurred to me how I looked because everyone in the gym was going through their own struggle and I understood their looks. My image of myself was going through a metamorphosis. One moment I worried about my face, the next I was feeling tough because I had endured such pain. Who am I now… A process that is still ongoing, or should I say a question

Page 13 - Minor Milestone

 

            Something I haven't mentioned much, and here I digress… I wore a neck brace, a a brace to pick from my tiny neck. It allowed for my ventilator to attach to the trech in the front via a gap. I'm sure from the outside it looked like some sort of medieval contraption. From my vantage point it was uncomfortable and the itch in the back of my head was unbearable at most, at the least it was ever the present. It just became a part of me after a while. I slept with this thing on and I ate with this thing on. And every day I got a brief moment of relief when it was taken ever so carefully off my neck. In order to change the little strap that held the trech in place.

 

            Such were my days as I followed my new routine and gradually met others with the same or similar spinal afflictions. I met a woman who had children who'd been in a car accident, whose husband dutifully stood by her, and brought the kids for visits. I met this one girl who'd lost her sister and barely spoke the language. I met a young boy whose life was only saved by the fact that his MRSA virus attacked an injury to his back. He was paralyzed from the chest down and I believe watching me might have helped him snap out of his own depression. You see, he could use his arms. I saw a lot of people without knowing their stories, but the injuries were obvious, just like mine, or paraplegic. I didn't know individual stories unless I was told directly, but my therapists indirectly discussed the different injuries and how they were sustained. It was mostly men, and it was mostly freak accidents or sports injuries. The few women that were there were like me, car accidents. I saw a lot of neck braces and a lot of trech's.

            I imagine there were probably just as many itchy necks out there, I never asked. What I understood was that I was certainly not alone. This was a very different feeling than what I’d had in the trauma center. Although the nurses in the trauma unit were more than capable of making me feel comfortable and even brought out some smiles and laughs, I was still alone in my injury. I now had comrades, even if most of them were too traumatized to be sociable. To be fair, I was too much of a loner to be sociable with the sociable crowd. I wanted to do my thing. Get it done and find a way to get this trech out of my neck and breathe normally! But alas, I got to know people through my classes and through my neighbors in the hallways. Those people made lasting impression on me because their struggles seemed so insurmountable to me. They made me forget about my own struggle which was also a battle. The little things I focused on like a nagging itch were a way to deflect from the larger issues like the reason I wore a brace to begin with. I knew why I was going through the motions and I knew full well what my goal was, but I kept looking away from myself so I could smile more easily.

            One long weekend my aunt/godmother visited me and it just so happened the Dr. visited me on a day she was there and announced it was time to take the brace off. This was a historical moment, and it was a thrill to me that she was there. But the most exciting thing about losing that brace was getting to that. itch! My aunt had wonderful long nails and proceeded to scratch my neck and discovered a piece of surgical tape that had been stuck, left behind, as it were, creating this ominous itchiness. With those wonderful nails she got that tape off, and my neck was finally relieved. A small step I know, but everything I experienced in the way of progress was a huge milestone for me. Oh yes, I slept much better too. Without that thing around my neck.

Page 12 - New Expectations

            Once the holiday passed no time was wasted. My schedule was given to me with the explanation that over time it would increase in activity. I had therapy in every category, OT and PT, recreational, assistive technology, special interests. In my case the special interests were arts and books. But all bases were covered in this form of rehabilitation. I had to complete every class before my departure and I had to have three hours of combined PT and OT. If I miss something for any reason, I made it up. But that was also my choice. There were others that sat in their rooms and refused any kind of therapy. I remember feeling sad for other people when I wheeled around. I guess that was always in my nature to want to help others, and it was hard for me to put myself in the same category. But there I was with my schedule and my bland breakfasts and my tilted chair, doing my best to keep up.

            During my stay in the area, they experienced one of their coldest winters, complete with snow on Christmas which they hadn't had in many years. Now, if you've ever been in a hospital for an extended period of time you’ll know they are kept cool and dry to stave off harmful bacteria. The same applies to a rehab facility in that meant I was freezing most of the time. Another odd side effect of the spinal injury in the C-spine region… Your thermostat gets turned upside down and you default to cold. I saw many other patients wearing hats or towels over their heads. I wound up with a nice collection of winter hats, ha ha. On a rare day I could get away with just my T-shirt and sweatpants. But most days, it was a hat and some sort of sweatshirt.

            And so it was, every day learning to navigate with this loaned electronic chair, operated by sip and puff technology. Every day a little closer to learning to live in this new body… Every day slowly weaning off the ventilator. I was at a point where I used it at night and during the day had just my trech in for short bursts of time while I ventured out of my room. As I tolerated it, there were longer bursts, until finally I was able to leave that place with just a Band-Aid over some gauze on my throat. But I’m not there quite yet in my story, I digress… My days begun with medications, yet my nights were not exactly sleep filled and peaceful. My ventilator was checked around midnight every night, vitals were checked, catheter bag was emptied… What sleep. I ask… And then finally the medications, breakfast, bed bath. Initially I did not take showers as I didn’t have the proper chair. Amazingly, it was one tech or CNA, as is the proper term that got me dressed. But they were referred to as techs. Everyone I encountered was amazing for that matter… And so it was, an amazing place to be.

            The first important matter of business and rehab is to figure out exactly what there is to be rehabilitated in the scope of this injured frame. Turns out mine begun with my left shoulder and bicep… Still my strongest areas today. But not the only ones! Never, never say never because you never know. What started in this place was only the beginning for me. No one here nor at the trauma center ever told me what I could or would not be doing, no one said what to expect. So I chose to expect. Everything.

Page 11 - A Life More Organized

 

            This new experience was going to take getting used to. I had a setback to my speaking ability because before I was allowed to use the speaking valve again, I had to be evaluated on the ventilator. Talk about frustrating! It was only a couple days and I got through it begrudgingly enough. There was so much more going on around me in this new place that I quickly forgot about any inconvenience. However, It was sort of rough timing that I happen to arrive only the day before Thanksgiving! Things were quiet, people were off work and we had to wait… For what we weren't quite sure.

            Turns out I waited for the driest most bland turkey dinner I'd ever had! I think perhaps dessert may have been better but I can't remember. I know that my family went out and perhaps had burgers that day. I changed rooms after a couple of days and I was introduced to what would become one of my most popular modes of quick transport, the Hoyer lift. Here the main gear was bracketed to the ceiling as it was a fancy electronic lift and the piece came down with a tug so that I could be strapped in a sling and moved. It was not graceful and it still isn't! And except for the cheesecake the food never got better either. My family cooked in a separate apartment and brought me relief as often as possible for dinner or went to a local market and picked up my favorite, salmon and tomato bisque. The food in-house while meant for nutrition, was not going to help me gain the weight I'd lost being tube fed. So my bony ass was always in jeopardy of falling through the sling as they Hoyer me from bed to chair and back.

            Oh yes, the chair! One of the first things that they did was get me a suitable electronically operated wheelchair and then quickly bring me to be measured for my wheelchair. For the next two months this was the way my world would run, everything on a schedule, organized, like clockwork. I was assigned a doctor, a physiatrist that would oversee every facet of my rehab. I would have a team including my nurses and therapists that always worked with me and therefore communicated with each other. I was assigned classes to learn about my particular form of spinal injury. My family also had to take classes, essentially the same ones but also from the caregivers perspective. So now I was suddenly eating and rolling around as an independent "sort of" human being for the first time since the accident. All of this did not come together neatly mind you, there was a huge learning curve for me and my family. But suddenly I was out of the woods of trauma and into the light of rehab. But wow!!

            One of the challenges I faced being back in a sitting position was vertigo. It is not easy going from lying down to sitting up straight after so long. Is also a direct result of the damage to my spinal column that I would experience this vertigo. For a long time I did not set up directly straight but had to tilt my chair back in order not to feel dizzy. This was all under my control with the marvel of "sip and puff" technology. This is how I controlled my chair, my TV and called my nurse. There was also a handy gadget at the side of my bed meant to catch all the stray phlegm I coughed up. Gross but necessary, ha ha… Oh the joys of still being on the ventilator. But there was a system set up right away to help wean me from this beast of a contraption. No detail went unattended, yet independence was encouraged from the get go. This place did not push a patient but rather allowed that person's own desire to heal, to steer how each day proceeded. Sure some people were tougher on me, gentle in nature but tougher… But no one ever insisted I sit up straight or attend a class. If I wanted to I could set my own clock but I tried very hard to allow their own clockwork design to work for me.

Page 10 - A New Phase

 

            "Parting is such sweet sorrow" I know, ironic words to quote when leaving a place of trauma and chaos and overall negative yucky stuff. But nevertheless, I live, despite this horrible thing that's happened to me, the smile on my face was always due to the fact that I was still alive. So as I was wheeled down to a little waiting plane, heartfelt goodbyes came from all directions and tears were shed. One of my new friends, a young woman whom I bonded with inexplicably through simple knowing smiles stayed with me all the way until I boarded the plane. Of course boarding meant wheeling me on with my portable ventilator on a gurney. This was strangely okay with me. I was looking forward to the flight, the outside air hitting my face for the first time, the movement of the plane. I remember the sun, for the first time in two months, feeling the sun on my face. Simple things become monumental. My boyfriend accompanied me on that flight which was not a simple thing for him at all, but monumental for both of us. Believe it or not I enjoyed my flight to the rehab unit I would be at for the next two months. I even slept a little.

            One of the reasons I landed where I did was because this was one of the few places that would take me as a rehab patient while still connected to a ventilator. Part of my rehab was to be getting me off that vent. This was a world apart from where I had just been. Upon arriving I was met by my aunt/godmother and my brother and sister soon followed. My boyfriend stayed by my side until he was settled in to the long journey back home alone in a rental car. People were there for me, people made sacrifices. I know I'm one of the lucky ones but there was still some fear and trepidation as to what was coming next.

            Next turned out to be the big room with some new bells and whistles that I could never even have imagined. First there was the little TV that rotated on a pedestal so it could be positioned right over my bed and I operated it myself. My first lesson in what was called "sip and puff" technology. By breathing into a tube or gently sipping from the tube I could turn the TV on and off and change channels. This was independence for the first time since the accident. This was huge. I knew then that this place was far and away the absolute right place for me to be. I had struggles ahead, but hey, I now had TV! The next thing I never could have imagined was being given a swallow test by way of feeding me a few bites of pudding, a cracker and something to drink. Presto, I was now allowed to eat solid food! Yes, all the time in the trauma unit I was on a feeding tube, not pleasant and never to be repeated. Having a ventilator means sacrificing a lot more than breathing on your own. But things were going to change here, for the better.

Page 9 - Parting from Chaos…

 

            Before parting completely with my experience in ICU, it's important to look back on some of the more positive elements. It may seem strange to make such a statement but sometimes amazing things come from tragic events, or because of. New friends appear that wrap you in a bubble of protection. One such friend came to me by way of old family friends that I never knew about because they were on the side of my brother-in-law. She took an interest and somehow we connected and through her therapies I was able to relax in quiet moments and find some peace among the chaos.

            Other friends just seem to evolve out of the relationships between myself and the staff. I can't explain how these things happen but I know I got my toenails painted and special visits just to say hello they were passing by. Somehow I managed to share stories about life and love in general with some of the evening nurses during the less hectic times at night. Other times because of where my room was positioned, I shared in the collective chaos in my heart went out to so many patients who suffered so many different traumas. Something in me wanted to help. There are parts of you that don't change, just because you are changed physically. Love is love, it shouldn't stop and I can explain why I wasn't mourning my own self, except that there was so much love. It surrounded me, so I was able to feel it for others I'd never met.

            Another amazing thing happened between myself and my very best friend from childhood. As fate would have it though we grew up in another state we both landed in the south within a couple hours of each other. She came to me and through her a pebble was thrown out into the art community that she is a part of. Support came to me in waves as the ripples grew and cards of original art of all kinds started to fill up my walls. This not to be outdone by cards from other friends and family! My room became a sanctuary. All I had to do was look around at any given time to find the support I needed. I also had the loving support of my boyfriend, something unexpected for me anyway. This is not a situation that tends to bring people together. Paralysis and relationships… It's not a story of fairy tales. But he supported me and told me to fight and breathe and he understood me when sometimes others could not. The art of love, it comes in many forms as I found out.

 

            Upon leaving this place of dramatic recovery, one of my new friends was compelled to come with me as I exited out the building toward a small waiting plane meant to take me to a rehab center. She was one of those who smile was infectious, one of those that just connected and was barely a word spoke between us we became friends. She held back the tears but could see in her face how hard she tried. This was one of many miracles that my chaos brought about, the people they came together to help me point in the right direction to continue healing. For as much hard work, sweat and tears that went into getting me into the right rehab center, there were equal amounts of smiles and laughter and connections made. I would not wish this journey repeated nor would I wish to give back any of the beautiful people who smiles and friendships I gained because of it.

Page 8 - Communication

 

 

          Communication became of the utmost importance. This is especially true when you're tethered to a breathing machine, with no mobility and no device to call for help when needed. It became both comical and tragic and could change in an instant to either of these. Lip reading was the first hurdle and then came the apparatus that completely altered my state by allowing me to speak!

 

In the very beginning, right after surgery when I saw my sister's face for the first time I was able to speak. I don't know how I sounded, if I muttered, if I spoke… But I said "I'm going to get the f*ck out of here" and that was that. I don't recall any speech after that. If I did, it was lip movement because the ventilator came very shortly after I was intubated. Lip reading was comical and frustrating endeavor for both myself, those trying to care for me, and family and friends. I can recall so many names of my nurses but it would do them a great disservice to try to name them all. Those I have forgotten I can still see their faces. One of those in particular described herself as clumsy but she was nothing of the sort when being a nurse. The only clumsiness we shared collectively because she could not understand the words I mouthed. Mostly we laughed about it but it was definitely frustrating on both ends. There were others that seem to be able to interpret entire sentences without a hitch. I don't know how anyone gets good at it except to say I'm obviously not the only patient that was ever in a position to have to be lip read.

 

In the case of family and friends, everyone did their best. There's never any telling who's going to be good with such tasks. And of course I don't know how good I was at mouthing words. I was told not to over enunciate because it made lip breathing more difficult. Go figure. Then one day because my breathing was growing a little bit better I was told there was a device that could be attached to my trech that would allow me to voice words as I breathed out. I could only wear it for short periods of time but when family and friends came in and I was able to say their names… The look on their faces was beautiful to me. It was emotional on all of us, hearing my voice which I imagine was only a whisper as a point. But it was no less than a small miracle to be able to talk to the people I love once again.

Page 7 - Just Keep Breathing

 

 

         The over all theme, while obvious, can get lost in the details of each day spent trying to live. You might say I had a team overseeing my care, but when it came to the ventilator in my lungs and how to proceed, there seemed to be three refs with different plays in mind. The only agreement was that the fluid in my lunges had to come out! With this detail so prevalent in my day to day, such as whenever I rolled to one side or the other or even was laid back in a straight position, I felt fluid move and often had to cough it up. A few times it came down to a critical point wherein I had to have something called a bronchoscopy. Fun fun. It was most affectionately referred to as a "Bronc", by some. I did not necessarily look forward to this "procedure" as it involved going directly into my lungs via my trache with the suction device and a tiny camera. Of course the good news for me was that I was put under and I quite look forward to the countdown to temporary oblivion and then waking up a couple hours later with no memory of the procedure and just a nice mellow glow in my head.

          It was not really in the grand plan to have to wean me off the ventilator. It was doing a fine job but I certainly didn't want to be tethered to a breathing machine. The pulmonary team I had did their best but each of the three had their own specific way of doing the weaning. It was very uncomfortable for me to have my orders changed each time one of them was on duty. This became more and more difficult and it seemed like I had many days of struggling. In truth I don't know how long it went on before I finally made the firm demand that I liked one Doctor's method and it was my decision as the patient to stick with that one method. How I was able to make demands will be described later… But there is a very pivotal moment between my brother and I during all of this. He had come into the hospital feeling very frustrated and wanting to be angry at me for resisting, as he thought, getting off the vent. At the time he arrived it just so happened that my breathing had become very labored and I had asked for a respiratory therapist but it had been nearly 45 min. that I lay there on my side very scared because I could not breathe. As my brother rounded the corner to my room I began to cry, seeing him. I knew finally I might be able to get some help. When he saw my tears, of course his grand plan to inspire me with anger, just melted away. I told him what had happened and his anger turned toward the staff so off he went looking for quick help. I don't recall how long it took but I know he stayed with me and realized that I was actually suffering. But there was no mistake I wanted to breathe on my own eventually. It was not an easy process.

 

          In the midst of all this, the bright light was that there was an apparatus that could be attached with the mouthpiece that allowed me to speak. Otherwise people had to get used to lip reading and some were pretty good at it including my brother. But when I was able to speak however weakly, I just could not get enough in!

Page 6 - The Mire

 

In the mire of the healing  process , and that is what it is with such a severe injury, a mire to wade through, there are still moments when a smile or even laugh is permitted. But it is like a journey of extremes. You cannot count on anything happening aside from the routine set in place, dictated by your particular "needs".

One moment in particular that stands out in the "laugh" arena is a day probably later in my stay at the trauma unit wherein I found myself sitting up in bed with my chin having dropped down below the chin rest in my neck brace covering my face up to my nose. Along with that discomfort, since I couldn't get my chin back in it's right position, there was the issue of the washcloth that had been laying across my forehead to cool a slight fever, that had slipped down over my eyes. Picture if you will a medieval knight, sort of, with his face shield down. I sat this way alone in my room knowing that the only possible rescue was if someone walked by and happened to notice me sitting there speechless and blind except for the sliver of vision I had where I could just see people's bottom half as they passed by my door. Fortunately it was not long before the very nurse who had been assigned to me that day and set me up for "comfort" in this way, came hurriedly into the room exclaiming what a terrible nurse she was, only to find me laughing as she freed my face. This of course made her laugh both with relief and the humor we both saw without having to speak. That was Kelly, one of the many wonderful nurses I had.

These little moments I cherished. Others live in my memory because of the horror. My lungs were a constant source of concern as they battled fluid and the onset of pneumonia. Breathing was above all things, my constant adversary at the gambling table of life or death. In one particular and probable, as I look back, close call, my lungs had to be drained manually by way of needle and drain tube. This could only be done by wheeling me down to a CT scan so that the procedure could be done with precise visual input. This was explained to me again by that ever protective respiratory therapist in a rather hurried/urgent fashion. I understood that while I was being asked if I would be able to do this, I really didn't have any choice. I had to be detached from my ventilator and brought down to the CT room with a manual vent in the backup of the breathing bag which is used to manually pump air into the lungs in an emergency situation. Off we went and I was further instructed that I would need to be on my side for a period of time. Whether or not this would be comfortable seem to be a moot point. This thing had to happen, whether or not I was comfortable but it was also critical that my breathing stay as steady as possible. In the scan, on my side, there was immediate vertigo and in my panic my oxygen plummeted in the bag came out. The entire process was one of panic and vertigo and tears and ultimately I came to the conclusion that it was probably because of the position I was in the car before I was rescued. I attributed my fear to that and for that my respiratory therapist was extremely moved and apologetic. I know now, while that may be still be true, the injury I suffered also made my ability to gauge and subsequently adjust to my position in space, a sickeningly impossible task in the early days of recovery.

So this was the mire I trudge through both physically and mentally. I do not want it to be lost on any readers that I write from my own experiences for recognition… I write to help bring understanding and compassion for those others who have had to trudge the mire.

Page 5 - Reality or Something

          To say that I had "clarity" throughout my stay in the trauma unit would be only partially true. It is more accurate to say I had self-awareness. The heavy medications I was given made me hallucinate which was entirely new to my world, yet I knew what was happening. There was one moment where I looked at the solid ceiling above me and saw a sort of smoked plexiglass. There was a conference room above me and I saw beneath the table and chairs, people coming in and out, and my cat under the table looking down into the room at me, crying. All of this I knew was not actually happening. There was no conference room above me and certainly my cat was nowhere near there. But nevertheless I enjoyed the show.

There was a common theme in my hallucinations, actually the only constant like a rerun of the same show. A television set was mounted across my bed above me but I never wanted it turned on so instead I was staring into a dark mirror of sorts. In that mirror I often saw a small child on the floor to my right/left with dark hair, moving in such a way that it looked like jerky stop animation filming. But she stayed right there, sitting, standing or fussing around but never looking directly at me in the mirror. I felt comforted by her presence yet I knew she was not really there. The other image that was quite recurring was that of myself whole before the accident, sitting behind my injured self in the bed, cradling me.

None of my "hallucinations" were ever disturbing to me. The disturbing things were the things that were very real and happening night and day. The sound/vibration of the specialized hospital bed that was meant to shift my body and help prevent bed sores, was a constant annoyance. But the scariest part of the bed was being repositioned because when I was on my side and the bed tilted, my head would slowly drift down and I felt myself rolling slightly. There was no way for me to readjust my body nor did I have the strength to move my head back, though I tried. All I could do was wait until the next position shift, done every two hours. Shifting, rolling, tilting, with constant sound in either bed vibration or alarms from IVs or other monitors… This was not life as I knew it…

Page 4 - Revealing

And breathing affords us such luxuries… As do all the other benefits of having a fully functioning body. So for a bit of background into who I am and where I have come from, before and after "the worst day"… Let me introduce myself with these images…




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1.Pike's Peak Colorado weeks before the accident. 2.Shepherd Rehab Ctr., December 2010. 3.February 2011, my birthday at home with my best friend Elizabeth. 4.Sail Rock off St. Thomas early 2010. 5.Moving my arms in OT 2012. 6.Using standing frame for OT/PT 2012.


This will not be the last time I give you a glimpse into my reality. But I wanted to make a formal introduction and demonstrate that what you see when you look at me now, actually is not the whole story of who I am. It's part of my story. When you look at a person with a disability regardless of the "type", it's important to understand that what you see is not always the truth of that life. We all have a history and we have a future. How you respond to those around you can play a very big role in their future, even if it's only for that day. It might be a very important day… Assume that it is, and smile. My next blog page will continue where I left off, back in the trauma unit…

Page 3 - Still Spinning

 

            There are things about the accident that I could not have known until I was told later… For example, when I flipped I came to rest against a tree. I also didn't know how badly I had cut my scalp. So many things the mind/brain protects us against, pain, tumbling, sounds, smells, blood, fear in general… It comes back in bits and fragments and in the time it takes to process what we know, we have to choose sadness or courage in our journey forward.

After my bold statement to my sister which I thoroughly meant, the next few days were a mixture of total clarity and drug-induced fog or dare I say sleep. One does not sleep in the trauma unit. One is kept alive therefore monitored with vigilance. I'm at a point right now where I realize I have not slept normally since that day.…… That clarity I speak of had me fully aware of the sensation of being intubated, that tube down my throat into my lungs, not pleasant. My lungs were full of fluids and when I tried to pull air in and push it out, I was as often choking on mucus of sorts. To add to that I was also biting the tube in a clench response to the stress of trying to breathe. There was also the feeding tube that went up my nose which would prove to cause problems in my sinuses later on. But I was constantly being told to stop biting because it was inhibiting my breathing, easier said than done. The huge neck brace I was wearing was not exactly helping matters either. All of this culminated to form one particularly bad moment…

I had no way to call on a nurse if I needed one. Everything was up to the monitors in my room that showed heart rate and oxygen saturation levels in my blood. Otherwise unless someone walked by my room and I caught their eye, I was at the mercy of those alerts. So when one day I became so overwhelmed with fluid in my mouth and could not breathe and the panic set in as I waited for someone to walk by… No alarms went off, no breath came in so I began to flail and move as much as I could which meant mostly my head and neck, until someone finally noticed my distress… A nurse came in and immediately suctioned the fluids out and warned me against moving my head so much. Disaster averted but the next phase was being told by one very kind and protective respiratory therapist that if I could not breathe through intubation I would have to be put on a respirator and that would mean I might be able to get back off easily or ever. A ventilator would be breathing for me and it was a scary idea in everyone's mind that I could not do that myself. For me, all I wanted to do was breathe, no matter the consequences down the road…

Page 2 - On the Ground

            Inside the vehicle there was only darkness, there was no awareness of being upside down… No body awareness at all. I just knew I couldn't see and I thought it was night. The sound of that cutting tool was very distant compared to what it should have been. But I only know that now, then, I was in a state of self preservation. A dark cocoon that only allowed positive sounds… That is until I realized I was being put on a backboard and I felt the neck brace being put around my neck. In that moment I heard/felt something inside my neck, like gravel. That's the only way I can describe it and it was very brief but that's when I knew. It was further solidified in my mind when I was told I would be put in the ambulance until the helicopter came to get me. I was asked if I understood and I did, about the helicopter coming…

In the ambulance I realized that I felt as if my knees were still up, as if they were in the sitting position and I knew they were flat on the gurney at this point. The whole picture was beginning to coalesce in my mind. This has to be paralysis. I vaguely recall being transferred into the helicopter and I have only a tiny snippet of memory… Being asked by the doctor if I wanted my sister to come in before surgery, being told I would probably get emotional and I had to be very careful not try to move my neck. I opted not to have her come in. I was probably protecting both of us at that point.

Last night for some reason "45° angle" came into my mind, and it makes me wonder… But I digress… I know partly because I was told but mostly because I very clearly remember the tubes up my nose and down my throat, being intubated. I have always had to clear recollection of seeing my sister's face apparently after coming out of anesthesia from surgery… I said to her "I'm gonna get the fuck out of here"

09/30/10 Day One - The Worst Day

 

            On an otherwise normal day life can take an unexpected and some might even say grossly tragic turn. Actually I can't think of anyone who wouldn't say that it was grossly tragic, in my case. Certain details of the morning are as vivid as photographs. I know exactly what I was wearing right down to the jewelry and I even remember looking in the mirror before I left and being satisfied that it was the right outfit to go from traveling right into dinner somewhere in New York City. There really wasn't anything out of place that day. I'd done the trip to the airport so many times that I had it down to the minute practically. I like getting to the airport and getting right on the plane. Maybe grab a coffee and something non-nutritional like a chocolate chip muffin, but that's it. I packed only a carry-on whenever possible to cut down on the time it takes to check a bag. Once on the plane I'd shove my red Vera Bradley Paisley print duffel bag into the overhead bin, take my seat, fish my book out of my green canvas bag and read. That was what should have happened but it didn't. I actually only made it just a few miles from my home before fate intervened.

            I've heard people say that time slows down during an accident but I can now throw in my own two cents and say that time did nothing of the sort. The road I was on is not heavily traveled but for some reason a vehicle traveling in the opposite direction decided to use the opposite lane as well. I saw it coming at me head-on and the gray matter computer in my head very quickly assessed that I had two choices… Choices 1, use the opposite lane to pass him/her… Choices 2, go off the road to my right and hope to be able to recover and get back on. The first choice seemed too risky because what if the other vehicle went back into the correct lane… We'd still have a head on… So I went off to my right. It should have ended at worst with me stuck in a ditch… Should have…

            But no, instead I found myself in a vehicle that did not want to obey my commands. Perhaps I bumped back onto the road at the wrong angle… Maybe steering locked on me… Maybe it was just that time for me… I was heading for the opposite side of the road at a very strange angle and something inside me just knew this was going to end very badly. The only thing I could do was shout "no no no no no" and then nothing. An empty gap in time followed by darkness and a voice telling me that they were going to get me out of there. It was so dark I thought it was night… I saw nothing just heard the reassuring voice and the sound of the cutting equipment… The kind they use to cut people out of vehicles. All I could say was "help me" over and over until I heard my phone ring and then I told them it was my boyfriend and to please call him back and let him know what was going on. Because I knew, I knew exactly what was happening… I knew they had to cut the seatbelt to get me out… I knew I broke my neck.